"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘surgery’

To recap: a lot going on… concussion and post concussion symptoms, possible CSF leak, recurrent ear infections. Lots of doctors. Blah. Blah. Blah. Here are Part 1 and Part 2 if you want the longer versions.

As I have mentioned the brain/ neurological stuff has us concerned but there are always other issues to make things even more interesting. In November, Em screwed up her shoulder. It had been an ongoing issue, one injury after the other and one day it just quit. Got an MRI and it showed tendinopathy, which is a fancy way of saying tendinitis. Basically she has no movement in that shoulder that does not cause pain and has been in a sling day and night since. External rotation is excruciating. There was no evident/major tear on the MRI but we got her in to the Ortho to find out how to proceed.

If you have read for a while, you might recall that Em is rather needle averse. She will do pretty much whatever she needs to do to avoid any and all sharp objects. But, she wasn’t surprised and didn’t object when they offered her a cortisone shot. Well, she did tell the PA who did the shot that he was rude as he inserted the needle. She had been told it wouldn’t really hurt, just a little pressure, and she found that to be not precisely true. He laughed and told her that he was almost done and she could say whatever she needed to say to get through. Which was not a wise offer in my opinion, considering I never know what might come out of her mouth at any given time – and she was suffering from a concussion so he got off lucky, I think! Later she asked how far the needle went in and I told her she really didn’t want to know. She said it felt like he shoved it into her joint and I told her that is sort of the point of the shot. She was not impressed!

Anyway, he didn’t hold out much hope that the shot would do much on its own but he sent her to PT and was hopeful that the shot would help PT be a little less painful and more effective. In all honesty, I don’t think the shot did anything – she has had no noticeable pain relief, but then again who knows what it would be like if she didn’t have the shot. It was definitely worth a try and I was so proud of her for braving it. She pushes through an awful lot on a daily basis but this was kind of a big deal.

On to therapy… She had her eval on the 31st. She is seeing “her” therapist, who has pretty much been with her from the beginning. So, while he is admittedly not an EDS expert, he knows Emily. And we trust him. Her eval revealed nothing we didn’t already know. Her shoulders are extremely unstable. They slip in and out with pretty much every movement. That makes rehabbing her shoulder challenging. She will not tolerate normal rehab; for now, she has very simple isometric exercises that are done with me stabilizing her shoulder.

Her exercises:

arm stabilized and in ‘neutral’ position by her side so she can do a few reps of pushing up, down, in and out. These are isometric exercises so we are talking tiny movements. Doing 5 leaves her winded. Doing 10 exhausts her as if she had just lifted her own body weight. We have pushed up to doing 10 but it is more important for her to do 5 good ones than 10 sloppy ones.

With her arm/ shoulder stabilized, she does a few reps of external rotation. This is very painful. The goal is tiny movements to stay below that pain threshold as much as possible.

with arm/ shoulder stabilized, she squeezes her shoulder blades together. Sounds much easier than it is.

We added to the first exercise at her last appointment – we are going to bring her arm out of neutral, to maybe 20 degrees and try the isometric movements. That one is going to be rough.

When her arm is out of the sling, which he does want her to do as much as possible when feasible, he wants her to stretch her arm out straight, gently move her wrist and fingers, and bend it a few times. That last part is incredibly taxing. She shakes as if she was lifting 100 pounds. Clearly, her muscles are weak.

Unfortunately, her other shoulder is nearly as bad. There is no injury but it is weak and it is suffering from compensating for her left shoulder. We are doing exercises on both sides and hoping for the best.

Everybody we have seen while she has been in the sling has made a big deal of her getting out of it because her shoulder will freeze up. We kept telling the doctors that the problem is her arm falls out of the joint if it is not supported. It is unstable enough that freezing up starts to sound good at this point. (I exaggerate there a bit, freezing up is all too possible and we don’t want that either, but you probably get what I mean.) We felt pretty vindicated when the PT was so concerned about her instability and told her to keep it in the sling. She should, and does, take it out but it has to be supported when not in the sling. So, she either holds it in place with her other hand or props it up with pillows.

The Ortho PA did say if PT doesn’t help, the doctor might need to go in and tighten things up. I didn’t go into it then, knowing we will cross that bridge when we come to it, but surgery is not a good option. Seriously. I mean, it could absolutely become necessary and we may be facing that choice down the road but we are going to do everything humanly possible to avoid it, because once we go down that road, I fear we will never stop. And that doesn’t even bring the issue of CRPS into the mix and how bad an idea surgery would be in that regard. I am only talking about the reality that tightening an EDS joint invariably will fail in a year or two or five and she would be considered lucky to get that much time out of a repair. And yet, we could find ourselves in a position where possibly gaining a year or two of function might start looking mighty good.

Suffice it to say, her shoulders are not good. We feel we are in good hands, both with the Ortho and the PT. We follow up with the Ortho (last time she just saw his PA) on the 18th and hopefully she will be making some real progress in therapy by then. I think it is safe to assume this will be a long, hard, grueling process. There is no easy fix and she is willing to do what she needs to do to get better.

We are concerned about her neck. Of course, wearing a sling is hard on her neck. Her muscles are already tight and it is just getting worse. As I mentioned in Part 2, the Concussion Expert wants her to do stretches to loosen up her neck and hopefully ease her headache. She can’t really do any of the stretches he suggested, so I have been massaging her trigger points hoping to ease the tightness. Unfortunately, that has led to her neck being rather scarily unstable. When those trigger points are released, she ends up a bobble head. And that is not good. It is a matter of constantly juggling one issue with another and trying to figure out how to manage them both; often, they are competing problems with solutions that cause direct complications for another issue. It feels like we just go round and round.

But, we have a plan and know where we need to be headed. Everything else is just part of the journey. We have been down a similar road before and made it through; there is every reason to believe this time will be no different!

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A year ago, Emily had spent a very unpleasant few hours in the ER, endured a very bumpy, rapid trip to Indianapolis in an ambulance in the middle of the night and was recovering from an emergency appendectomy that was done in the wee hours of the morning. It was a frightening experience but she endured like the trooper she is and came out of it better than we expected.

It is hard to believe a year has passed – in some ways Em has made real progress in fighting EDS & Company, in other ways, we are still fighting the same battles. Certainly, some of the issues have worsened and we go round and round trying to find answers. And, it has been a long recovery period. I don’t know that she has really fully recovered from the surgery even now but, she has made some strides in other areas.

The surgery revealed some problems that desperately needed addressed – a little like peeling back the layers of an onion. We are still peeling away and trying to figure out what those layers reveal. One of those layers will be peeled back on Monday – she will finally have a gastric emptying study. Who knows what it will reveal, but it is long overdue.

This business of living – day in, day out, year in, year out – with EDS is exhausting and frustrating. The problems never seem to stop, never really go away – they seem almost eternal. You address one issue and another pops up. Like running on a treadmill, you feel like you never really get anywhere.

But, a year ago, we weren’t thinking about any of that – we were just feeling incredibly blessed to have our daughter safe and sound and still with us. Not a bad thing to remember when dealing with the phone calls, appointments, tests – all of the minutia and uncertainty of today.

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My hubby’s knee surgery was yesterday and it went very well – he is doing great and is home complaining about being bored.

Apparently, the long list of problems listed on the MRI report was indeed just irritation from the meniscus tear that he has hobbling around with for years. You might recall that I was worried that his surgery would reveal all kinds of serious problems – he clearly thought I was overreacting. (Pretty much the story of our lives!)

If it wouldn’t embarrass him, I might mention that telling him the doctor said his ligaments were all fine got him to stick his tongue out at me while he was feeling a little loopy in the recovery room. But, it might embarrass him, so I won’t mention it!

Anyway, the doctor said the surgery went great – took less than an hour, he cleaned up the tear/tears and chunks of cartilage floating around. His ACL (the one he blew out in high school) is intact and, while a little loose, is fine. His LCL (the ligament he was really concerned about) looks ‘rock solid’. Repeating that comment is what earned me an emphatic ‘I told you so!’ from my husband.

We definitely are thankful that we ended up with the best possible outcome and hopefully this surgery will last him for another 10 or 15 years.

He probably will be able to return to work next Monday and hopefully will have a lot less pain to deal with. He is already able to walk better than he could before the surgery, so that is a hopeful thing. He will probably spend the days off work reminding me how he was right and I was wrong! I think I am so relieved that nothing serious was found that I don’t even care!

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I haven’t mentioned this but my husband, who isn’t diagnosed with EDS but clearly has it, has a bad knee. If you have been reading for a while, you know that we joke about ‘the EDS he doesn’t have’, because he is in a wee bit of denial about it. However, he may be getting an official diagnosis in the near future…

In high school, he blew out his ACL playing a pick up game of basketball. He had surgery to reconstruct it, but his knee has been a problem ever since. The EDS explains why that is and why he blew it out in the first place, of course, but for most of his life, we were clueless as to the explanation. 14 years ago, when Em was a baby, he had another surgery to clean up the meniscus. It helped, but that knee was still just not right and after a few years, he was back where he began.

He was probably due for another surgery 4 or 5 years ago, but he has put it off and put it off. Over the last six months, maybe even the last year, his knee has been rapidly worsening. He diagnosed himself with a likely meniscus tear and figured that wasn’t the end of the world. Finally, when he could barely walk on it, he reluctantly made an appointment with an ortho he trusts. (In fairness, this doc did his second surgery years ago and then was no longer affiliated with the hospital where my husband works. He was waiting for him to come back, which he recently did – thank God!)

The initial x-ray didn’t really show anything, so he had to have an MRI. Understandably, he was worried that it wouldn’t show anything wrong and it would be a waste of time. (I was pretty sure it would show something, since he was in serious pain and could hardly put weight on it.) He grumped and grumbled before, (probably during), and after the MRI.

Then, a day or so after the MRI, he got his report back. There is a list a mile long of things wrong with his knee. He still has cartilage, so that is good, but it is torn – probably the source of much of his pain. Beyond that, pretty much every ligament in his knee is either partially or completely torn. They are hoping that it is just irritation, but I have my doubts. Plus a handful of other medical terminology that is above my pay grade.

His scope is planned for Feb 26th – they will clean up the meniscus tear and check out the ligaments. If they are as messed up as they appear on MRI, we will have to figure out where to go from there, but that would likely be an additional, much more complex surgery. Because all/most of the ligaments in his knee are involved, any reconstruction will be more complicated and require a ‘special’ specialist. Of course, the EDS complicates this all the more and will need to be taken very,very seriously. (My darling, normally intelligent hubby didn’t feel any need to share the fact that he almost certainly has EDS with the doc. Fortunately, I was there and made sure the doctor was told. He later told me that he was planning on mentioning at some point before surgery…What would he do without me?)

So, we have another surgery on the calendar – none of us are really looking forward to it, but hopefully it helps him have less pain and more function. I may lose whatever is left of my sanity after having him home as an invalid for a couple weeks – he is not the best or most cooperative patient in the world. You probably already figured that out, though!

It isn’t often that I talk about Andrew and not Em, but, he gets to be front of the line right now. Prayers would be appreciated, if you are willing. It is going to be an interesting few weeks…

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Unless you experience it yourself, you really cannot grasp how thoroughly it permeates every facet of your life. How that illness turns everything you knew on its head and changes your life completely. It is especially hard when you have to interact with people who really don’t understand what you are going through, because they haven’t ‘fallen down the rabbit hole‘ like you have. Those people are almost always well meaning and simply making small talk, but sometimes that small talk is like a knife in the heart.

Case in point: Now that summer is here, from time to time, someone will casually ask something like, ‘so, what are you doing this summer?’ And because my choice of answers are rather limited…

Nothing at all, because my kid is too ill to travel

Therapy

Pushing calories to make sure she doesn’t loose any more weight and hoping she continues to recover from her recent surgery with no further complications

Oh yeah, we are pretty excited to be going the the EDNF Learning Conference. What’s that, you ask? Well, it is this medical conference where we will get to hang out with other EDS families and learn from the best EDS experts in the world. What exactly is EDS, you ask? Oh, never mind…

I have about 2 seconds to ponder what to say that won’t come out sounding like a pity party (and if Em is with me, I really don’t want to say anything that will make her feel sad or guilty). And, then, because I was busy thinking all of that and didn’t actually give an answer other than rueful shake of my head, I usually get treated to an enthusiastic rundown of their plans.

Which are nothing much, of course. Just camping and canoeing and swimming and amusement parks and traveling and such. None of which my kid can do, even on her best day.

And all I can think is during this type of conversation is, ‘you have no idea how lucky you are’. Lucky to be clueless about chronic illness. Lucky to be “normal”. Lucky to have no limitations to consider when making plans. Lucky to be planning summer fun rather than doctor’s appointments.

It is so hard not to feel bitter and envious when confronted with conversations like this. But, how can I be truly upset when that person really is clueless – they just live in a different world than I do. The same world I used to live in. Before chronic illness saunters into your life, you don’t even have a clue that it exists, let alone what an upheaval its arrival will cause. Ignorance is bliss, right? And being genuinely ignorant of living with chronic illness is not something I can penalize anyone for.

Instead of dwelling on what we can’t do and what we are missing, a little counting our blessings goes a long way:

We get to go to the EDNF Conference in August and hang out with people who ‘get it’ and learn from the best minds in the field – last year we couldn’t.

We have access to therapy, good therapists and doctors who care and can help Em recover from surgery and get better and stronger than she was to begin with.

Em is still alive and kicking, when the appendicitis could have killed her.

She is getting better everyday and therapy is helping her get stronger.

She has decent pain management, which she did not have last summer.

She has proper and fairly effective treatment for her headache, thanks to Dr. Diana and the Driscoll Theory, which she did not have last year.

We know so much more about the cause of most of her symptoms and have real hope for treatment in the coming months.

What are the typical pursuits of summer when held up next to these? Nothing at all, when you stop and think about it.

Em is continuing to recover after her appendectomy. It still is up and down for her, but generally she is doing well. She still has a lot of stomach pain, particularly when she over does and her pain medication wears off. The Miralax is working very well and has addressed a lot of her issues and she truly wishes she had tried it sooner. [We recommend trying the Miralax in cold apple juice (not too sweet, not too sour) and letting it dissolve thoroughly!] Her appetite is still very poor and she still gets full after a few bites but I think we are seeing some small signs of improvement. Could just be wishful thinking though… The weight loss has slowed and she is hopefully going to start at least maintaining where she is.

Em started water therapy last week and did really well – except that we stupidly scheduled therapy two days in a row for the first week. Seemed like a good idea at the time, but it totally kicked her butt. However, she managed better than I expected and it was a pretty big accomplishment considering all she has been through. She did have a big increase in pain though after the second visit, so we will need to let them know so they don’t add in more in this next week. The therapists are ones she has worked with for the last few years, so they know her and she knows them. And, they are my husband’s co-workers/ friends, which helps my comfort level. At any rate, I think Em is going to really benefit from a few weeks of therapy -hopefully it gets her jumpstarted and feeling better and stronger. She is scheduled twice a week for the next 3 weeks and then we will see where to go from there.

We had a family event to go to this weekend and that is always a challenge for Em, especially after her back to back therapy sessions . It involved a 2 hour car trip each way and going to an outdoor party where it ended up raining and cold. But, it was for a very good cause and Em wouldn’t have stayed away for anything. Seeing friends and family (and having a couple slobbery dogs to love on) is almost always worth the expenditure of energy it takes and I think she enjoyed herself. She will pay for it for a few days but that is better than never doing anything fun.

We got registered for the EDNF Learning Conference, thanks to a ‘donation’ from my parents. With the conference being in Cincinnati, I hated to miss it but just couldn’t see how to afford it. My parents stepped in so we could go and we really appreciate it. Even Em wants to go – previously she has rejected any suggestion that she meet other kids like her or anything of the sort. But she is starting to talk about it and asked to go to the Conference with us. I just don’t see how she would be able to do the full weekend, but I am hoping she will be able to come down for one day/afternoon and maybe participate a little in the kids program. I know it would be good for her so I am hopeful that we can get her there for at least a day. I know I am looking forward to it now that I know for sure I am going!

I think that is all my updates for now – BTW, I am still working on my Emergency Plan and will be posting soon about some ideas I have about making it work. (See Surgery/ Emergency Tips Parts 1, 2, 3 and 4) I haven’t forgotten and I am working on it! It is a big task but I am anxious to try out a couple ideas and share them with you, if they work!

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Yesterday we saw the wonderful surgeon who did Em’s appendectomy for a follow up appointment. And she was still wonderful.

First, we saw a young doctor – probably a surgical fellow – who works with Dr. West. Emphasis on ‘young’ – he didn’t look much older than my 16 yo son, so that was kind of funny to me. However, he was very nice and gentle with Em, so he got points from me. But, it was when I brought up mast cell activation that I decided I really liked him. When I told him about Em’s suspected mast cell disease and that, because surgery is a known trigger, I thought it had really stirred her mast cells up causing a lot of her current problems, he totally agreed and said that surgery was a major activator of mast cells. No rolling of the eyes, no snorting, no perplexed look while trying to remember exactly what mast cells are. Very refreshing.

Then, Dr. West came in and talked to us. Em’s incision is looking good and healing well – better than any of us really expected, I think.

But the ongoing GI issues and the fact that she continues to lose weight are concerning. She has lost at least 10 pounds, maybe more like 11 or 12 and most of that in just the last couple weeks. Dr. West thinks a lot of her pain and poor appetite is from the constipation so we are going to work on that. Miralax twice a day for a week and see if it helps, if it does, we can bump down to once a day. Regardless, I am to call Dr. West in a week and let her know how things are going and we will decide from there. She hopes to not have to see Em again, but will if necessary.

I remain impressed with this surgeon and would choose her to operate on my kid if it was ever necessary again.

On the Mast Cell front: On the way home, we stopped to eat and Em had a major reaction. She had not taken her Zyrtec and Zantac yet and just started feeling awful after eating a little. She ended up taking her Zyrtec and Zantac and then took a Benedryl when she started feeling like she was going to pass out. After the Benedryl, she eventually perked up but felt pretty rotten the rest of the day. Of course, she had to get up at 7 to get ready to go that morning and had only had about 6 hours of sleep, so feeling rotten was a given.

It is hard to believe that we are a month past surgery and that Em is doing as well as she is. The mast cell stuff and the weight loss is concerning, but hopefully we will be able to get her appetite going again if everything else settles down. Knowing we have a caring, knowledgeable doctor on our side is a great comfort – I feel less alone in dealing with all of this now which is a pretty cool thing!

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Welcome!

Thanks for visiting my blog where I chronicle 'Our Life with Ehlers Danlos Syndrome'. I am sharing my family's journey with EDS (and everything that goes along with it) in the hope that our experiences will help someone else.

Go to Our Story to read about the early days of our EDS journey. Or click here to go to the first post of this blog, if you would like to start at the beginning.

Take a look around - I hope you learn something that is helpful in your own journey! While you are here, I would love it if you left a comment telling me about yourself. Feel free to contact me if you have any suggestions about what you would like to see on this blog!

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